Author Archives: arianezurcher

Pain, Air Pressure and Autism

Posted on April 3, 2012 | 10 comments

Emma woke up in the middle of the night crying.  Her screams of pain, the result of intense pressure in her ears, were like the sounds of an animal under attack.  Last night, having read about the intense sensory issues many people on the spectrum must continually cope with, an intensity we neuro-typicals have difficulty understanding, I felt that I finally understood.  I “got it” in a way that I hadn’t until now.

For years Emma has, periodically, complained about her ears.  When she does we rush her off to various doctors and specialists, only to be told that there is “nothing wrong.”  But those words are being said by neuro-typical doctors and specialists and to a neuro-typical there is, indeed, nothing “wrong.”  But Emma is not neuro-typical, what appears fine to us, does not feel fine to Emma.  She is particularly sensitive to the changing air pressure.  She feels unbearable pain in her ears.  We cannot predict when this will happen, though I suspect the pain she experiences is exacerbated when she spends a great deal of time in the pool swimming, as she did these last few weeks while in Colorado.  Emma loves swimming.  She particularly loves jumping off the diving board and swimming under water.  I could be wrong, of course, but my guess is, the pressure is worsened with those activities.

Last night by the time I’d woken up and gone to her, Richard had already calmed her down.  When she saw me she came to me and wrapped her arms around me, her cheeks still damp from her tears.  She preempted me by saying,  “Ah, baby.  I know, I know.  Your ears are hurting.”  Her voice sounded almost exactly like my own.  She was using the words I use.  She was saying those words with the same tone I say them.

I held her for a few seconds before following her into the bedroom.  I urged Richard, bleary and exhausted to go back to bed, while I sat with Emma.  “Have to go see nurse Mommy,” Emma said, stroking my arm.  “Go aaaaahhhhhh!” Emma made a pretend cry.  “Mommy come!  Mommy come.  I need help!  AAAAAHHHHH!”  Emma continued in a soft voice, reenacting what had happened just moments before.  “Daddy says – you have to blow your nose. Oh, I know, I know it hurts.”  Emma nodded her head up and down.  “Mommy’s here!  It’s nurse Mommy!”  Then she lay her head on my lap, pulled her blanket up around her shoulders and began sucking her thumb.  As I sat with her in the dim light of her bedroom, her head in my lap, stroking her hair I wondered what must it be like to feel a sudden shock of pain caused by something you cannot see or stop.  No matter how much you cry out for help, it isn’t lessened.  I tried to imagine, what that must be like.  How frightening that must be.  How upsetting to be the only one feeling it.  How disorienting.  As I sat there I became aware of the air pressure.  I could feel the pressure in my own ears, not painful, but uncomfortable, building the more I concentrated.  And I found myself wondering what would it be like if I felt this all the time?  How distracting it must be.  What if I felt this, but much more intensely?  What if I felt this pressure, but the pain was excruciating?  How terrifying, while hoping that someone could remove what was causing the pain.

Only we can’t.

For more on Emma’s journey through a childhood of autism, go to:  Emma’s Hope Book

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Posted in Autism, Parenting, sensory issues

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Autism “Awareness” and a State of Bliss

Posted on April 2, 2012 | 4 comments

I’m having “a morning.”  You know, the kind where, despite how organized you are, despite how well you laid everything out the night before, everything seems to work against you.  So rather than go on a rant, enumerating all the things that have managed to go “wrong” in the last three hours, I’m going to reflect on Emma.  Because Emma is a very, very happy little girl.  In fact, unless Emma has gotten into a perseverative loop about going to the zoo or someplace that she has become fixated on and feels she cannot do without, she is in a state of bliss.  It is the sort of blissful state achieved by gurus, yogis or LSD, or so I’m told.  Yet Emma comes to this place naturally.  She does not have a “practice,” she does not sit cross-legged staring at a fixed point for an hour each day, she does not meditate, feeling euphoric if she managed to pause the endless chatter in her head for even a few seconds, no, Emma is full of joy almost constantly.

Today is Autism “Awareness” day.  It is a day that was intended, and no doubt with the best of intentions, to bring much needed awareness to the larger community.  Yet, instead it has become a day that many of us dread.  Instead of bringing awareness about what it means to be autistic, we are bombarded with frightening statistics.  Statistics that many will read and then, feeling helpless, will turn the page.  I’m all for awareness, but let’s then be aware.  Let’s be aware that our society does not embrace those with disabilities.  Let’s acknowledge that our school systems are failing our autistic children.  Let’s look at our government and exactly what is being done to help those who are autistic.  Let’s take a good hard look at autism. Let’s look at the prejudices, the bullying, the marginalization of people on the spectrum.  Let’s take a good hard look at ourselves.  Are we assuming incompetence when confronted with someone who makes grunting noises, whose speech is garbled, who flaps their hands, or doesn’t look us in the eye?  When someone cannot speak do you assume they have nothing to say?  When you see someone, on the airplane, in the playground, sitting next to you on the bus or subway, who is acting differently, do you move away?  Do you feel irritation?  Do you feel annoyed?  Do you feel impatient and wish you’d gotten onto a different car or bus?  Awareness begins with each of us.  Awareness is more than lighting something up a given color.  Awareness begins with being open.  Awareness means stopping and examining our beliefs.  Awareness means asking questions.  Awareness begins with each of us.

Awareness.

It’s a great word.

Let’s not allow it to become meaningless.

For more on Emma’s journey and ours through a childhood of autism, go to:   Emma’s Hope Book

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Posted in Autism, Autism "Awareness"

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Creating a Community

Posted on March 30, 2012 | 13 comments

Oddly enough I was planning to write a post about commenting on blogs and comments in general.  Just as I was sitting down to begin the post, I received an email telling me one of the blogs I follow had a new post.  The post was entitled – For Ariane and Those Who Lie Awake At Night.

A little backtracking is in order – about a week ago during another late night blog surfing session (finding blogs related to autism has become nothing short of obsessive – who says the apple doesn’t fall far from the tree?) I found a blog, Life and Ink.  The writer is a mom whose autistic son is now a young man.  Since she began the blog last fall it was easy to read all her posts, which I did.  As I did, I wrote a comment on one particularly moving post and then she answered and I kept reading and read this:

“And with that said dear reader, if YOU need help, if YOU are overwhelmed, contact me. Talk to me. Let me or another parent who has been there listen and help you. If we pooled our resources and decades of experience just think of the difference we can make for each other and for our children.

Now that makes me happy.”

When I read that, I was in the middle of trying to put the series of autistic writers together for the Huffington Post and I was writing the introduction to the series.  I thought about what Charlotte had written and it inspired me to write a hypothetical conversation:

“What if, instead of receiving that memorable phone call when Emma was first diagnosed, I received a call that went something like this:

“Your daughter has been diagnosed with autism.”

“Excuse me?”

“Let me give you a list of blogs and people you can call who have been where you are now. I think you’ll find them invaluable. These are parents whose children are autistic and autistic adults who are happy to speak with you. They will help you help your child.”

When the HuffPo piece was published I commented on Life and Ink telling her that she had inspired me to write that.  We then wrote back and forth and now she’s written the post that I’ve added the link to.  In that post she writes (in response to something I’d written earlier about lying awake in the middle of the night and listening to “the voice” – “The voice knows once you share what it has said it will lose its potency, its grip on you. And that is why talking to people about what you are feeling, what it is saying, is so important. That is why these blogs are so important.”

I don’t know if any of this makes sense to everyone reading this, but each comment I receive on Emma’s Hope Book is like a little gift.  Each time I comment on someone else’s blog and they reply, it’s the same.  A little gift wrapped up in words to savor.

On this most recent Huffington Post piece an autist wrote – “I have this feeling we’ll both soldier on.”  I loved that he wrote “we” because the truth is “we” will.  We will soldier on… together.  (As Emma would say.)

So to all of you who have commented – thank you.  And to all who haven’t, but think about doing so, DO!  It’s wonderful and I promise you, I’ll respond.  I promise.

For more on Emma’s journey through a childhood of autism and ours, go to:  Emma’s Hope Book

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Posted in @The Huffington Post, Autism, Autism "Awareness"

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Pizza and the Art of a Low Key Response

Posted on March 29, 2012 | 12 comments

Emma ate a slice of pizza last night.

That sentence required some space.  It needed to be written by itself with nothing else.  For most of you, this may seem like an excuse-me-while-I-yawn moment.  But for us, it was a DID-YOU-SEE-THAT-STOP-THE-CONVERSATION-EMMA-IS-EATING-PIZZA-FOR-THE-FIRST-TIME-SINCE-SHE-WAS-FOUR-YEARS-OLD moment.  Please excuse me while I dance a little jig,  do a little arm twirling while yelling woo-hoo, spin around, do a few jumps up and down and shout as loud as I can, “Oh yeah!  Oh yeah!”  And, I don’t know, this might be totally overdoing it, but what the hell, a fist bump, just for good measure.

Emma ate a slice of pizza last night.

While other parents are counting the years when they will no longer be required to sit down to one more meal in a pizza parlor, or wonder how they’re going to fit four large, now empty, cardboard boxes into their trash bin, we are rejoicing.  This is HUGE.  We had dinner with friends who have two boys about the same age as Nic and Emma.  And there was pizza.  And then suddenly there was Emma happily digging in as though this was a food she eats all the time.  As though nothing extraordinary was going on at all.  As though sitting at the dinner table with a group of other kids eating what they were eating happens all the time.  I will end this now, because really there’s nothing more I can say.

I was planning to write a whole post about comments and commenting, but I’ll have to save that for tomorrow.  This was just too good to pass up.  Joe said, “Did you take a photo?”  But I was so excited, I forgot, so you’ll just have to trust me.

Emma ate a slice of pizza.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

12 Comments

Posted in Autism, Parenting, picky eaters

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A Call to Listen

Posted on March 28, 2012 | 4 comments

I’m reposting Ariane’s recent Huffington post below. I think it’s one of her most eloquent, powerful and important posts. Whoever is in charge of Huff Post Posting apparently didn’t agree with that assessment since he/she buried it in the Huffington morgue and  now it’s been wheeled away for cremation. Ariane wanted the piece to generate some excitement about her intention to post the writings of autistics on Huff (and here) in an effort to make people more AWARE of what life is like on the inside of ASD. Reading the blogs of autistics has completely changed our perception of ASD, our children, our goals, our life together. Hopefully Ariane’s “call to listen” will spread (hint, hint) and more people will hear the joy, laughter, hopes, fears and frustrations of autistics who have been discriminated against, marginalized, disenfranchised, bullied, or simply ignored by ‘normals’ who can’t bear to look, listen or care. So without further ado:

A Call to Listen

The beginning of my “awareness” regarding autism came in the form of an apologetic voice over the phone.  “I’m sorry to be the one to tell you,” she began.  I don’t remember the exact wording of the rest of the sentence as I was too distracted by her apologetic tone and sadness.  I remember fighting the urge to make her feel better.  Responses like – “It’s okay”, or “it’s not your fault” or “don’t feel sad,” went through my head as she continued telling me that my daughter Emma had been diagnosed at the age of two with PDD-NOS.   Then she asked, “Do you understand what that means?” I wanted to say, “No, actually.  I have no idea what that means.”  Not wanting to appear rude, I said nothing.

I knew very little about PDD-NOS (Pervasive, Developmental Disorder – Not Otherwise Specified.)  Did it mean she’d become an independent adult?  Would she be able to live a happy life, filled with things and people she loved?  These were some of the questions ricocheting around in my mind.  When I didn’t answer, the voice said, “Do you agree with the diagnosis?”  Was this a rhetorical question?  How could I answer that?  If I disagreed, would it somehow change the diagnosis?  I remained silent.  “Are you there?” she finally asked.  And suddenly all I wanted was to be home with my husband, Richard, my son, Nic and my daughter, Emma.

Two years ago I began a blog out of pure laziness because I hated writing emails updating those members of my family and friends who were asking about Emma.  I figured I’d write a blog, relieving myself of the more cumbersome mass emails I felt obliged to send.  I have documented everything from Emma’s initial diagnosis of PDD-NOS to her diagnosis two years later of “autism” to our (successful) attempts at getting her out of diapers, to the evolution of my perceptions, regarding Emma and autism.  The blog began as a way to document Emma’s journey, but it became a document of our journey too.

I have never stopped researching and trying to find ways to help Emma with her GI issues, her articulation and language processing, her discomfort with transitions and her need for routine and rules.  But it wasn’t until recently and because of a comment left on my blog that everything changed.  I discovered a world I didn’t know about – blogs written by autistic adults who were more than capable of speaking for themselves.  My views and “awareness” have dramatically changed as a direct result of reading and listening to those voices.

What if, instead of receiving the phone call I did when Emma was first diagnosed, I received a call that went something like this:

“Your daughter has been diagnosed with autism.”

“Excuse me?”

“Let me give you a list of blogs and people you can call who have been where you are now.  I think you’ll find them invaluable.  These are parents whose children are autistic and autistic adults who are happy to speak with you.  They will help you help your child.”

“Really?”

“Yes!  Your child is not broken or damaged.  In fact, your child is simply different. There are ways to help her.  Don’t worry.   Even if she is non-verbal, there are methods that will help her communicate.  There are countless things you can do that will mitigate some of the stress neuro-typical parents sometimes have in trying to understand their autistic child.”

“Oh thank you.  That’s wonderful.  I so appreciate your help.”

“It’s my pleasure.  I’m sending you some links and contact information to get you started.”

“Thank you so much.”

“Remember, this diagnosis is not a death sentence.  It is a starting point.  Don’t be frightened by it.  Don’t ever underestimate her potential.  You are not alone and neither is your child.”

What if autism awareness began with listening to adult autists describing what their lives were like?  What if those same autists were on the boards of every autism group?  What if all of us, whether we had an autistic child or not were aware of autistic adults living happy, fulfilled lives?  How would that change our “awareness?” I am profoundly grateful to each and every one of the autists who are speaking out and expressing their opinions on their blogs and through other forms of media.  If we want autism awareness, these are the voices that need to be heard.  It is up to us to listen.

Throughout the month of April in commemoration of “Autism Awareness” I will be posting the writings of several autistic adults in a series of posts entitled:

Autism Awareness = Listening to Autists

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Posted in Autism, Autism "Awareness", Parenting

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Autism, Huffington Post and Getting Away to The Cabin

Posted on March 27, 2012 | 5 comments

As I wrote yesterday – please be sure to read my most recent post on Huffington Post.  It is the introduction to a series of posts written by autists throughout the month of April.  Share the link, tweet, “like” and comment!

Last Friday Emma said, “Mommy, I want to go to the cabin please.” And since going to the cabin isn’t nearly as arduous as it sounds, we decided to go for a sleepover Saturday night.

It’s “rustic” but sleeps four comfortably and the kids love going there, particularly Emma.

Emma grabbed the heaviest pack and began tromping through the snow.

Once we arrived, she wasted no time getting comfortable.

Despite the fact it was broad daylight and there were lots of weird insects flying around, many of them inside the cabin.  Nic took enormous pleasure in shooshing all the bugs and moths outside, while Emma, Richard and I sat together in the rocking chairs.  Point a camera toward Emma and she makes her “say cheese” face.

We tried to get Emma to look at the clouds. They were like nothing I’d seen before.  As though each had it’s own rainbow.

But Emma was much more interested in sitting on the porch railing with her brother.

And looking out at the mountains.

When we woke up the next morning, Emma said, “Go back to Granma’s house, eat breakfast, go swimming in the indoor pool, make cake, pack and go back to the cabin!”

“But we haven’t even left yet!”

“Go now,” Emma said.  Then as she was packing up, she said, “Come back later.”

Makes sense to me.

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Posted in @The Huffington Post, Aspen, Autism, Parenting

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Autism “Awareness” on Huffington Post

Posted on March 26, 2012 | 2 comments

The following post has just been published on Huffington Post.  This piece is important to me as it is the introduction to four or five subsequent posts I am planning for the entire month of April, written by autists.   April, for those who may not be aware, is “autism awareness” month.  These autists who will be writing posts for me to submit are the voices that have changed my life.  These are the voices that, because they’ve changed my life are changing my daughter’s life.  These are the voices that are NOT being included in all the fund raisers for “Autism Awareness.”  How can we possibly hope for awareness if autists are not being included?  Please help me by sharing the Huffington Post link (here it is again, in case you missed the first one) through email, facebook, tweets, share it, comment, please, please comment, even if it’s just to say, “I read this” and send the link to as many people as you can.  We need these posts to go viral.  And I need each and every one of you reading this to help me.  Please.

Let’s change what “awareness” means.  With your help we can.

For those interested, this is Paula Durbin-Westby’s blog, one of the autists who has agreed to write the first piece to kick things off for the Huffington Post.

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Posted in @The Huffington Post, Autism, Autism "Awareness"

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Epidemic of Genius

Posted on March 25, 2012 | 12 comments

Below is another epic length post from Richard. You have been warned!

I’m a science nut. Ariane, not so much. I constantly pester her with the latest science news I’ve gleaned from books, articles, documentaries, the Internet. I just can’t get enough of that crazy science stuff. One of my greatest frustrations is that I have some kind of math glitch in my brain which prevents me from learning much of what interests me, especially the nuts and bolts of physics and of course, higher mathematics — which I would really love to understand. Despite my brain-freeze, or math dyslexia, or whatever it is — I love numbers. I’ve even been known to do numerology readings. In short, I’m a seeker. Like many other non-scientist science lovers, I want answers to the BIG questions. Why are we here? What it’s all about?

For people like me, “What if…?” is a favorite lead-in phrase. When I heard Henry Markram’s TED talk and then read his Intense World Theory for autism and an interview where he theorizes that all autists could be genius savants and (here comes the real mind-blower) autism may be the next phase of human brain evolution – well, my mind grabbed that football and ran for the goalposts.

What if the Intense World Theory is correct? What if Markram is also correct in his theory of autistic genius? What if Emma is a genius savant too? What if all her friends at school are? What if every single one of the autists born every year are geniuses, or savants or genius savants? What if the staggering ONE PERCENT of infants now born every year with autism are ALL genius savants? What if new learning therapies like Marion Blank’s system catch on, and a whole lot more of all those savants born every year are able to communicate all the knowledge and insights they possess.

What if…(add your own far-fetched speculations here).

Well…if Markram is correct…it’s a massive game changer…for all of us.

Here are some staggering stats: it is currently estimated that 2.2% of the human population possess IQs of 140 or more (the extremely arbitrary genius IQ cut off). Since the world population recently topped 7 billion (and since I suck at math I’ll gladly use that nice round figure), then 2.2 percent of 7 billion equals 154,000,000 million geniuses walking around. And since IQ tests for autists are notoriously inaccurate (particularly for those who are non-verbal) – then many adult autistics and those born every year will not be crowned with the genius laurel wreath, yet nonetheless they may possess staggeringly high intelligence coupled with the uncanny insights that their unique perception of the world provides them.

The annual birth rate is now between 19 and 20 million people. One percent of those babies will (eventually) be diagnosed as autistic. What if every single one of these 190,000-200,000 autistics turn out to be genius savants? What could be accomplished with that kind of creative horsepower, if acceptance and encouragement furthered their interests and yes, obsessions? Or at the very least, what fruits might be harvested if they weren’t bullied, teased, ridiculed, marginalized and segregated? If their abilities weren’t so consistently and grossly underestimated?

It’s something to think about. I’ve been thinking about it all the time now.

When Emma first received her diagnosis, I knew next to nothing about autism. I just knew it was bad. A terrible tragedy. The loss of our hopes and dreams for a ‘normal’ life and a ‘normal’ family. Something to grieve over. As the years went by, my perspective gradually shifted. Emma’s nearly continuous blissed-out happiness and her mischievous sense of humor made it a lot easier for me to deal with all the difficulties she had with sensory issues, changes in her routines, communication problems, etc., etc. — and all the difficulties I had coping with them.

Since we found a learning therapy that actually works, my fear-based perspective has altered dramatically. Emma can read, write, add, subtract and speak in complete sentences. She loves to learn. She carries her favorite books around everywhere. With the recent oxytocin boost, we now walk down the street hand-in-hand – a behavioral shift as radical and unexpected as it would be for me to teleport to Mars.

Now Ariane and I are blissed-out with happiness much of the time. Our exposure to the writings of adult autistics has been as consciousness expanding as anything we’ve ever experienced. Beautiful voices telling sad, poignant, frustrated and hysterically funny stories of what autistic life is like from the inside. WrongPlanet introduced us to Henry Markram’s Intense World Theory for Autism, which have radically altered our perspective – permanently, I hope.

The epidemic of autism has been a rallying cry for myself and most parents of autistics who were and/or are desperate for a cure. If we hadn’t discovered Dr. Marion Blank’s  program I might still be feeling the same way. If I hadn’t read Henry Markram’s theories I would never have entertained the possibility that the epidemic of autism could also be the epidemic of genius – a phrase I keep repeating over and over like a mantra.

What if? What if?

In the not very distant past, nothing short of a complete cure for autism was an acceptable goal. My goals are different now. I know Ariane’s are too. We want more effective treatments, therapies and learning programs that help autistics cope with the difficulties they face and make it easier to navigate in a world that doesn’t necessarily correspond to their perspectives. We want more research into the causes and the neurological differences, not so autism can be prevented or eliminated, but so the difficulties can be mitigated. We want ‘normals’ like ourselves to be more kind, compassionate, helpful, encouraging, inclusive and aware that the kid or adult they are looking at as a weirdo, gimp, or even a retard, might well possess intelligence far in advance of their own. They may be more sensitive, insightful, kind, creative and inventive than those whispering, pointing their fingers, snickering or simply turning away because all they can see is the ‘handicap’ – and they cannot bear to look at it.

When Ariane was pregnant with Emma and Nic, we opted out of having an amniocentesis. The doctor told us that there was a real possibility of miscarriage. “Don’t do this unless you’re prepared to terminate the pregnancy if you find out your baby has Down’s Syndrome. There’s no point in taking the risk unless that’s your intention.”

That was not our intention. We both agreed that, “We’ll take what we get.” We got Emma. And we are incredibly fortunate.

When the human genome was first sequenced it cost over a billion dollars. Now anyone can have their own genome sequenced for under $1,000 dollars. Soon it will cost less than a hundred dollars. Couples wishing to have children will be able to identify every gene marker that may indicate a susceptibility to autism.

With that knowledge will come new decisions. What choices will be made?

Ariane and I still have many decisions to make regarding how we can best advocate for Emma and help her learn and communicate and understand the world she lives in. We want many things for her, but we don’t want Emma to be cured anymore. We want her to be supported and encouraged to learn at her own pace. To express herself in her own unique and wondrous voice. When/if she is able to communicate in the manner of many of the autists whose blogs we’ve been so incredibly moved and inspired by, we want to discover what she has to say about her life, her loves, her passions and fears and hopes.

Then Emma’s Hope Book will be fully her story, instead of our story about her.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

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Posted in Autism, Dr. Marion Blank, Parenting

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“Minus One Equals Zero”

Posted on March 23, 2012 | 4 comments

Emma reached for the last bag of Pirate’s Booty yesterday and said, “Minus one equals zero.”  Then she grabbed the bag and ate it’s contents.

I am constantly impressed with Emma’s mind and creative use of words.  I often think when I listen to her that there’s a kind of poetry in the way she phrases things, the way she will use seemingly unrelated words to describe something, such as “motorcycle bubbles” for the fireworks we see over the fourth of July.  It conjures up the noise, which she finds frightening, but also the visual image of bubbles, which I think she likes.  I don’t know if this is what she thinks of when she uses those words, but to me, it’s beautifully descriptive in a nuanced and personal way.  It’s very “Emma.”

When Emma and I did some literacy work yesterday, she was having a terrible time with a story we read and that she had to summarize.  I mentioned to Joe that we had a tough session, so when he worked with her later he used no verbal language and she was able to fly through the work.  During my session with her I was reminded of a post I read recently, written by an autistic adult who described how one day conversing and finding the correct words came relatively easily, but the following day, or even that afternoon, she found it almost impossible to express herself verbally.

I have become much more aware of Emma’s sensory issues in the past few weeks from reading other blogs written by autistic adults.  I have certainly been aware that Emma had to deal with a sensory overload, but how that manifested itself, what that actually meant to her was something I had trouble understanding.  But reading what it’s like for some other autistic people has been enlightening.  This is one of my favorite posts on the subject of language and words.  It is written by E. who has a blog – The Third Glance.  The post is entitled – Words.

Another post – Squawk? by Square 8 is another wonderful description of how talking can be akin to walking through a minefield for many on the spectrum.  Sadly this blog’s last entry was in November 2010.

Minus one equals…

For more on Emma’s journey through a childhood of autism, go to:  Emma’s Hope Book

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Posted in Autism, language, sensory issues

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A Different World

Posted on March 22, 2012 | 5 comments

To piggy-back on to Richard’s “Shift” post; mine began with a slight tremor in the form of a book.    Autism and Representation Edited by Mark Osteen.   That book opened my eyes to so many things, but most importantly it introduced me to the words, the voices and lives of many adult autists.  After reading Autism and Representation, I started looking for other writings by autists.

While I was doing all of this, my friend, Kelly (I consider her my friend, though we have never actually met, nor spoken) commented on one of my posts with a link.  I went to the link, (written by an autistic adult) couldn’t believe what I was reading, read everything on her blog and began reading all the blog links she listed.  From those links I was introduced to dozens more and finally mustered up the courage to respond to someone’s comment on one particularly controversial post, written by a mom of an autistic child.  For me, someone who was now showing up very, very late to the party, I was fascinated by the comments written by autists much more than the post itself.  Being the compulsive and thoroughly obsessive person that I am, I systematically went through every single comment, madly clicking on each and every person’s link and began reading their blogs.  This was the beginning of what turned out to be the education of a lifetime.  Wow!

One of the links led me to the WrongPlanet where I read the interview with Henry Markram about his Intense World Theory of Autism.  His theory confirmed everything I felt I’ve known about Emma, but that many specialist said wasn’t true.  On the contrary, the common thought about autists is that they lack empathy and therefore feelings.  Finally I was reading something that resonated.  Markram’s theory has opened up another world to me.  I have always known Emma was very intelligent, I have never doubted that, ever.  But his theory of intense feelings and pain memory and how this causes the child to withdraw… well it was like being told you really are seeing what you thought you’d been seeing all these years.

Up until this last week, my fear of what the future held for Emma was something I could not begin to describe.  Everything about her future filled me with terror.  Every birthday marking another year gone by, filled me with trepidation.  Each time we had to teach her to state her correct age, I gulped down massive amounts of fear.  The fear was so great I could do nothing other than tamp it down.  I kept a firm grip on it.  The minute I felt myself sliding into it, I pushed myself back out.  That takes a lot of energy.  It takes up a lot of space.  I didn’t even know I was doing it until I began reading these blogs written by autistic adults.  Adults with a wide variety of issues and challenges.

It’s not as though I read these blogs and thought – oh isn’t it great how cheery and easy everything is for them.  Because it isn’t, far from it.  But somehow, reading about individual lives, feelings, struggles made it less frightening.  Reading the outrage, the cries to be heard, the desire to be respected and treated as such, the ridicule many have endured, the bullying ALL have endured, made it real for me in a way that I could not have anticipated.  And in doing so, the abject, nameless, all encompassing fear I have tried so hard to shove away,  dissipated, because there is this community that is like her, a community of people who understand her, who are fighting with courage, tenacity and determination to be heard.  They are fighting and speaking out, many with the hope that one day Emma and those like Emma who are just being diagnosed now and those yet to be born, won’t have to.  I am profoundly grateful to each and every one of them.  If we want autism awareness, these are the voices that need to be heard.  It is up to us to listen.

For more on our journey through Emma’s childhood of autism, go to:   Emma’s Hope Book

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Buffalo H & Buffalo J

Posted on March 21, 2012 | 4 comments

When we are in Aspen we stay on our ranch.  It is no longer a working ranch, but my mother and her sister built houses on it, separated by a stretch of dirt road.  You can’t actually see either house when inside one or the other, which is wonderful as each have views of the mountains, but they are close enough that you can walk from one house to the other.  Or as is the case with the children, they run.  Except in the summertime when one of us will yell after them, “Remember if you see a bear, don’t run!”   This comment usually elicits a dramatic display of bravado with the children demonstrating how they would raise their arms while yelling loudly until the bear wandered off.  We are hoping the bears are still hibernating, though it’s been so warm they may be out and about, it’s hard to say.  Yesterday afternoon, Emma and Nic went over to their cousin’s house and spent many blissful hours playing.

At one point Emma stopped, looked up at the enormous buffalo head situated in her cousin’s living room and said, “Buffalo head!”  Joe, who was standing nearby confirmed that it was in fact a buffalo head.  To which Emma replied, “Two buffalo heads.”

“No, Em.  Not two.  Just one.”  Joe pointed to the buffalo’s head.

“Two,” Emma said matter-of-factly.  Then she pointed to the house that was once owned by my sister, just up the road and said, “Buffalo H and,” she pointed back to the buffalo above her, “Buffalo J.”

I realize this story requires some explanation – my cousin’s name is Jennifer and the last name of the people who bought my sister’s house is Hunt.  When my sister moved out, she left the buffalo head hanging above the fireplace and when the Hunts moved in they decided to leave it there.  As we are good friends with the Hunts, who also happen to have two boys Emma and Nic’s age, we have been over to their house many, many times.  Hence Emma’s designating their buffalo as “Buffalo H.”

Excuse me while I bask in the glow of my child’s brilliant mind.

Neurotypicals =  The art of small talk, Kim Kardashian and Snooki.

Autistics = Einstein, Mozart, Nietzsche and Isaac Newton.

‘Nuf said.

Buffalo J.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

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Posted in Aspen, Autism, language

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Greeting Granma

Posted on March 20, 2012 | 6 comments

Friday we arrived safely in Aspen, or as Emma described it, “We have to take two planes, then get to see Granma!”  Despite my reservations about not having any seats together, people were kind and accommodating, several happily moved for us and we ended up all together.  I didn’t have to plead with anyone, or explain; I think this was a first!

Upon our arrival Nic and Emma ran ahead, first Nic flinging his entire body against my aging mother with all his might, so happy was he to see her and then Emma, more timidly perhaps, but with no less excitement wrapped her arms around her granma and hugged her.  We have been through this routine dozens and dozens of times, taking two airplanes, arriving in Aspen, my mother always there at the airport to greet us and never has Emma greeted her granma like this without at least some prompting.  My mother looked up at me with her beautiful smile and said nothing.  She didn’t need to.  Emma was now holding one of her arthritic hands and exclaiming, “Oh, Granma hurt her fingers!”  But instead of then racing off or letting go, she continued to hold her granma’s hand, tenderly examining her arthritic fingers, the same misshapen fingers my grandmother had, that as a child, I too had found so fascinating.

Later as Richard was unpacking and I was setting my computer up in the adjoining bedroom, Emma came in and said, “Going to go outside.  We can go outside and talk. Talk with Mommy.”  She then opened the door to the porch directly outside our bedroom and sat in one of the chairs.  “Mommy sit here,” she said, pointing to the other chair.

Obediently I did as she directed and we talked.  Emma talked about how high it was from where we were sitting to the ground downstairs where she could see the dogs playing.  She talked about how I was sitting with her in the chair next to her.  She walked the length of the porch and talked about how she couldn’t reach the dogs, nor could she reach the ground downstairs.  We discussed distance and the difference between being inside and outside and then she stood in front of me and said, “Now I’m going to sit on Mommy’s lap.”

Which she then did.  And I wrapped my arms around her, while we looked out at the Rocky Mountains, jagged and covered in snow and breathed in the crisp mountain air together.

The next morning, outside with the dogs, who were behind me looking at Emma.

For more on Emma’s journey through a childhood of autism, go to:  Emma’s Hope Book

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Shifts

Posted on March 19, 2012 | 6 comments

Richard back again, with more good news. Emma continues to amaze and delight us with her nearly continuous playfulness, mischievousness and affection. Ariane and I have also been spending a lot of time visiting the blogs of autists and aspies, which have opened up a whole new world for us — and caused a dramatic shift in our perspective on autism and our goals for Emma. I’m a big believer in synchronicity and lately it feels like we are being bombarded with ‘coincidental’ occurrences that have had the accumulative effect of completely altering the way we’ve always looked at our journey together (I only say ‘we’ instead of keeping it to myself because Ariane and I have been talking about this about twenty times a day and we have been on the same page with most everything we’ve discussed).

For those who don’t know me well, I write fiction. My first novel is a supernatural thriller called The Book of Paul, which will be published soon. It is very dark and creepy, with graphic sex and violence — in other words, definitely not for kids. So quite some time ago I began writing a book I could read to Nic and Emma (or they could read to me) — a young adult fantasy called The Dream Palace. In many ways, it was and is my attempt to process my feelings about Emma’s autism and my hopes for her recovery – in other words, it began as a fantasy version of this blog. However, my perspective on what constitutes Emma’s “recovery” has altered in ways I never could have imagined only a few weeks ago.

Let me try and connect some of the synchronistic dots: we met BL in Aspen while on vacation who also has an autistic child. She introduces us to Dr. Sandy Lowe who has a very different theory on the cause of autism. He believes that a genetic vulnerability coupled with a viral infection of the mother during pregnancy, probably also combined with an environmental toxic insult causes a biochemical reaction that alters the natural neurological development of the fetus (something to do with cytokines but I don’t want to get lost down that rabbit hole). Sandy recommends stem cell treatments which we try without any dramatic results, but when discussing one of Emma’s post-treatment brain scans, he tells us about Dr. Marion Blank who is working miracles with autistic kids with her new learning program. Lo and behold, her program begins working miracles with Emma!

In my ‘spare time’ I also happen to have run a program for K-12 schoolchildren, encouraging healthy eating, exercise, literacy and other good works via positive messaging on the side of milk cartons — as in billions of milk cartons to tens of thousands of schools across the country — a very powerful influencer. So I decide to commit all these resources to an anti-bullying effort because we have had many issues with bullying at Nic’s school — and lobbied with only partial success for a more aggressive curriculum to address those problems. Needless to say, with our steadfast goal of getting Emma into a mainstream school environment, we worried about how much she might be bullied because of her differences.

In looking for established anti-bullying programs to partner with, I run across the Kind Campaign. It was founded by two exceptional young women, Lauren Persekian and Molly Stroud who were both traumatized by girl-on-girl bullying in school. They have produced an amazing documentary called Finding Kind where they toured the country, compiling a heart-breaking collection of stories from high school girls whose lives have been devastated by bullying. By the time Ariane and I finished watching this award-winning film, our previously entrenched goal of getting Emma mainstreamed has flown out the window! No way do we want Emma exposed to this vicious, cruel and traumatic behavior! While we’ve had issues in the past with her school, one fact is undeniable — she is loved to death by everyone in that school, teachers and students alike.

Our sudden abandonment of the mainstream goal had the most unexpected side benefit — our overall stress level plunged like a bowling ball from the Empire State Building! We had no idea how much of our day-to-day anxiety was rooted in our conviction that we absolutely, positively had to get Emma into a ‘real’ school right now! Voila! Our ‘happy index’ leaps from a 2 to a 9 overnight!

Next, my truly amazing wife, partner and life-saver Ariane, in her relentless pursuit of knowledge — not just to benefit Emma, but to enlighten herself about what life is like for adult autistics, begins visiting all these blogs which she then introduces me to and also blow me away. I’m hoping Ariane continues to provide links to all these wonderful sites since this post is already approaching my typical epic length, but I’ll just say that it completely alters my perspective on ‘curing’ Emma.

I’ve never felt that Emma had to be ‘normal’ for us to have succeeded as parents, but I’d be lying if I said I didn’t hold out hope that someday she’d ‘lose the diagnosis.’ Now, much to my relief — and Emma’s too I’m sure, I couldn’t care less about her obtaining a ‘complete recovery.’ She doesn’t need one! We want her to be able to function in our crazy world well enough to live independently and happily, but her quirkiness is a-okay. The strange thing is, I’ve always been an oddball, OCD type and so are all my favorite people –artists, visionaries, scientists, geeks and obsessive weirdos of very stripe. To be off the mainstream kick is like getting back to my own roots.

The synchro-fun continues with Ariane’s discovery of Henry Markram’s Intense World Theory for Autism — which oddly enough is almost identical to Sandy Lowe’s in regards to the cause of autism — and goes further to postulate that all autistics are savants of one type or another — and autism itself may be the next leap in human brain evolution, though apparently it’s still working out the kinks. Which brings me back to The Dream Palace.

One morning a long time ago I remember going into Emma’s bedroom and as she woke up, she said something to me in a long and completely articulated sentence. I was shocked to say the least. I remember telling Ariane about it but I’m not sure I could remember what Emma said by the time I told her. In fact, I no longer know for certain whether or not it really happened! Had I been dreaming? To this day, I can’t tell for sure. Given how strange it would have been for Emma to talk like that when she could barely speak at all, it seems obvious that it had to be a dream. But then again…

Regardless of whether it was ‘real’ or not, that incident became the inspiration for The Dream Palace, where Emma’s character named Daisy in the book, is able to talk perfectly in the dream world.

I’m a research nut. I enjoy the research process as much as the writing. Unfortunately, I could only find one research study of dream patterns and content in autists and it pretty much sucks. So of course, I wrote my own survey! I’m trying to get it out to autists who are willing to participate so if any readers have suggestions on how I could do that most efficiently please let me know. In the meantime, I’m rewriting the story because after reading Markram’s findings, I’m now convinced like he is, that not only does Emma sense, feel, and perceive much more intensely than us highfalutin ‘normals’ — she may indeed be much farther advanced than we are — which hopefully we will discover as her communications continues to advance so rapidly.

Bottom line? Life is good, very good. All it took was a complete shift in our perspective.

For more on our journey through Emma’s childhood of autism, go to:   Emma’s Hope Book

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Posted in Autism, oxytocin, Parenting

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The Third Glance, Theory for Autism and Flying

Posted on March 16, 2012 | 6 comments

Two things – the first is that I wanted to mention a post I loved reading, written by E. of The Third Glance –  a 22 year-old autistic adult.  Her “Growing up Autistic: On Nature, Nurture and Abuse” piece is powerful, heartbreakingly honest and written with elegance.  Hers was one of the stories I was referring to when I wrote in the Evolution of a Perception post, “The abuse, the prejudice, the cruelty all of these austists have endured is staggering.”  Richard and I also loved her post – My Cat Is My Hero.  It’s beautiful, but then so is the writer, E.

The second thing I want to mention is an interview with Henry and Kamila Markam about The Intense World Theory for Autism on the blog – Wrong Planet.  It’s interesting, problematic in that I worry it will be misinterpreted by some, (leading to the type of  universal parental blame demonstrated by both Kanner and Bettelheim) but this quote was such an amazingly accurate description of what I’ve always suspected Emma experiences, I had to read it twice just to be sure I’d read it correctly the first time.

“The Intense World Theory states that autism is the consequence of a supercharged brain that makes the world painfully intense…”

They go on to say – “The theory was triggered bottom up from neuroscientific studies and the real changing point for us was when we found that fear memories were so quickly acquired, lasted longer, were difficult to erase and over generalized. This put all the results into context because the neocortex could render the world intense, highly fragmented and overly specialized while the amygdala would dial up the emotional component of the intense world making it potentially extremely painful and aversive forcing the autistic child to take refuge in a secure bubble. If they don’t succeed to take refuge through repetitive behavior, routines, rocking, and other types of behaviors, then they may display self-injurious behavior – like ants crawling all over your body. The diversity comes from the fact that we are normally diverse and if you add hyperfunctional circuits to that then naturally each autistic child will be even more different from each other. It is like taking all our normal differences to an extreme. This challenges society to accommodate autists, but diversity is the key to social evolution and so it is a good challenge.”

We are flying out to Colorado this morning.  I wasn’t able to get a single seat together.  I even called the airlines and begged them to do something. I told them we were flying with two children, one of whom is autistic, but they said there was nothing they could do.  We aren’t even in the same rows!  Wish us luck.

6 Comments

Posted in Autism, Parenting, travel

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“I’ve Got the Moves Like Jagger”

Posted on March 15, 2012 | 7 comments

This morning, Emma turned on Maroon 5’s Moves Like Jagger featuring Christina Aguilera.

It began like this…  (By the way, the turquoise thing Emma is holding is her string.  It’s a work in progress.  Every few days she adds more duct tape to it.  Pretty soon she’ll be able to use it as a snowboard.)

and then she did this

Which turned into this

and then this

“I’ve got the moves like Jagger”…

and she did and she was…

It was beautiful.

In it’s purest form – joy.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

7 Comments

Posted in Autism, music, Parenting

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